Tag Archive | hydrocephalus

Three Years of Blogging

Three years ago, I started this blog as a way to update friends and family about what was going on with Little Miss Minion. Our cell phones were blowing up with messages and phone calls, all wanting to know the latest on our little family. It was nice that so many people wanted to know how we were doing, but cell phones are a NICU nightmare for germs. I created this blog as a way to update everyone at the same time, reducing our need to touch our phones while in the NICU, and cutting out the time it took to answer everyone individually. This let us have more time to spend together, sitting on the couch in our room in the NICU, staring at the tiny little human growing in the incubator.

To everyone who reads this, thanks for being a part of our NICU journey.

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Happy 3rd Birthday!

Little Miss Minion turned three about ten minutes ago. It’s hard to believe that we started this journey three years ago with a one pound fourteen ounce 28 weeker and now we’ve got a little kid who just graduated from all of her therapies and loves to give hugs and eat cheese its.

We are so lucky.

End of an Era

A few weeks ago, Little Miss Minion had a special education evaluation through our school district. They did a series of tests to see how she performed in several areas, like speech and gross motor skills. This morning, we got our answer. Little Miss Minion has been disqualified for further services. This means that, according to the school district, she is caught up with her peers on gross motor skills, speech, language, and cognition.

It’s a strange feeling to know that we don’t have to schedule weekly speech therapy and physical therapy anymore. We’ve had someone come to our home to work with LMM ever since she came home from the NICU. So many appointments, tests, clinics, screenings. Part of me is a little in denial. How can my one pound fourteen ounce 28 weeker NOT qualify for additional services? She’s had five brain surgeries! She has actual brain damage (called periventricular leukomalacia). She spent the first 3 months of her life under 24 hour care in the best NICU in our area.

She caught up. That’s how she doesn’t qualify. Not only did she have to consciously learn to breathe on her own, how to suck, swallow, and breathe while taking a bottle, how to regulate her own temperature, how to regulate her heartbeat, how to live in the world three months too soon, but she did all that and more. 36 months after her dramatic entrance, she’s caught up to where she should be. At this rate, who knows how far she can go?

Our next steps are to come back for another evaluation (if we feel like she needs it) in about 7 months and to continue to be utterly impressed by our little rockstar.

Advocacy Day

As I mentioned before, our Minion family was invited to join other families in a trek to the state capital for the March of Dimes Advocacy Day. It was the first Minion Family Roadtrip!

We drove up the night before Advocacy Day and stayed in a hotel (graciously supplied by the March of Dimes). Little Miss Minion serenaded us for about half of the drive with a mashup of “twinkle twinkle little star” and the alphabet. We had hoped that she would fall asleep, but that only happened in the last thirty minutes of the drive.

We arrived at the hotel and checked in, brought up our luggage, and crashed. Little Miss Minion does not sleep in our bed at home, so she was very excited that Mr Minion and I were joining her. The catch is that she likes to sleep on her back, starfish style. And she’s never used a pillow. So that was an interesting several hours.

We woke up, got cleaned up, and sat down for breakfast (which was surprisingly good), and then made the short trip into the capital. After parking and walking to the building, we found ourselves inside the huge building and wandered until we found the March of Dimes area. There is large open area where different lobby groups can reserve space with tables and chairs for their members to wait between meeting their representatives. It’s kind of like home base. We met up with the group there and read over the materials we had been given. For each meeting we had scheduled, we had a folder with the information about the two bills we were lobbying for, information about how the bills could help people, and our personal stories. Several weeks earlier, we had been given a template to fill out that would share our own story with the NICU. We were also given a folder that contained copies of everything for us, including our schedule.

Our first meeting went well, and our personal story was well received. Having told the story WITH Little Miss Minion present and WITHOUT, it’s much easier for the audience to tell it with her there. People don’t expect good things when you start off with “28 weeks, and weighed 1 pound 14 ounces” and you can’t really blame them.

Our other meetings were good, and we got to sit in on a session of the House. The March of Dimes presented one of the representatives with an award for her work on the house bill. We were provided with a great catered lunch from Panera in between our meetings, and there had been water and soft drinks in a large cooler available as well.

It was so nice to see our primary nurse J again. I see her every once in a while when I run into her in the NICU but she hadn’t seen LMM since her 1st birthday. And Little Miss Minion was so well behaved the whole time. She got a little fussy towards the end of the day, but that was it. She slept most of the way home, and we were all in bed by around 7:30 that night. It was a long day, but a fun and rewarding one. I hope we can do it again next year!

Special Education Evaluation

Tomorrow is a big day for Little Miss Minion. Since she turns three in May, she ages out of the program that has been providing her speech and physical therapies. From here, she either graduates from therapies or she transitions into the local school district to receive services through them. Tomorrow is her evaluation. They will test her in cognition, expressive and receptive language, gross motor skills, and fine motor skills. There are a bunch of percents involved and she has to score below some deviation blah blah blah.

I don’t know the math involved but they take all her scores and compare them to where she “should” be. So basically this is where we find out if she’s caught up to her actual age vs her chronological. Since she was three months early, we adjust her age for three years. Theoretically, she should be caught up by her third birthday. Tomorrow, she’ll do the tests that will tell us how caught up she is.

If she doesn’t qualify, we could always pursue private therapies if we wanted her to continue. Or we could be done until she needs future evaluation. It’s a balancing act. Do we cut the cord and see how she compares to her peers in kindergarten? Or do we pay out of our pocket for therapy that the school district has determined she doesn’t need?

Or does she qualify to continue services through kindergarten? We’ll find out soon!

Little Things

Little Miss Minion has been surprising us with little things recently. She learned “old McDonald” at daycare last week, so now she sings that all the time. She talked to me about “dinosaurs-raaaawr” yesterday and wanted to watch dinosaur videos. I was getting her changed at some point and she told me to “watch my fingers” so I didn’t smush them in the dresser drawer. She got a little set of magnetic numbers and letters for Christmas and she can identify quite a few of them. It seems like each time we play with them, she knows one or two more.

This morning, she wanted me to carry her into daycare because it was too cold to walk. She also told me that Santa was coming because of the snow, and then we had to sing Rudolph the Red Nosed Reindeer. She can tell when we pull into the parking lot of daycare and she yells “we’re heeeeere!” When I pick her up at the end of the day, she says “mama, go home. Ebby bay home.” Ebby bay = everybody.

Next up: speech assessment in March.

Transitions

Since Little Miss Minion is coming up on her third birthday, she will be aging out of her early intervention program. Once she ages out, she will either qualify for services through our local school district or she will be considered caught up with her peers and will not need additional services.

If she needs services, the district will provide transport to and from her daycare and the school. I think they said she would do half days a couple days a week. She will be tested for speech, gross motor skills, and cognition. Our appointment is in about a month and a half, closer to her birthday.

If she doesn’t qualify, there are other avenues we can go down if we feel like she still needs help.

I guess we will find out. Her appointment is toward the end of March. It will be done at the school building with their therapists.